michiganjan

Hi Ernie, Do they have a Salvation Army near you? My husband is a volunteer at our local Salvation Army and they have lots of resources. You could call and tell them what you need and see if they can help. Michigan Jan

Morgan, Welcome back! I have missed your posts. I think the more you learn about what is going on with your body the more you are likely to get help for some of the symptoms. Just keep on unraviling the mystery. Hugs to you--you have been through a lot. Michigan Jan

I have had times that my hair hurt. I also get all over body pain where the worse spots seem to be hips, legs, arms, shoulders. This is sort of fibromyalgia and sort of not typical of fibromyalgia. For some reason, once I get that body pain, I feel very dark,--not exactly depression, but just very dark and want to curl up in bed until the pain goes away. However what I have found that has helped is not curling up, but getting moving and doing stretches intermittent through the day. It always passes. Hugs,

Dear Persephone, hug, hug, hug, hug, hug, hug, hug, hug, hug, hug, hug, hug. BIG HUG, BIG HUG, BIG HUG, BIG HUG, BIG HUG, BIG HUG, BIG HUG, BIG HUG! HUGE HUG! HUGE HUG! HUGE HUG! HUGE HUG! HUGE HUG! HUGE HUG! HUGE HUG! I also get shakiness. I have hand tremors a lot of the time and sometimes the tremors of my left hand extend up my left arm and this can happen at any time and for no apparant reason. I also get the jerks and these can be all over my body. However, the jerks seem to happen during stressful times. And here's just one more . . . . HUMUNGOUS HUG! And I second Sophia's comment in the following message. You do need better help. The person who is supposed to be aiding you is not reliable. Complain until you get one that is.

Sophia, Thank you for posting the link. I have learned so much from you and others who research and share on this site. Michigan Jan

To Miriam, I think you really have something there, Miriam, about feeling like I have power. I have been trying to understand why I feel so good so that I can use that knowledge to get me back to this state in the future when I get to feeling down. Yes, I feel like I have some power. Julie, I should have added to being creative, being of use. I think it is not only important to be creative but to be of use. The research you are doing is very valuable. Here are 2 creative ideas. I was sitting at the cancer center today next to a bald woman wearing a beautiful crocheted skull cap. She said she found it at a beauty supply store. I was thinking that those who like to knit or expecially crochet, might make skull caps for chemo patients and donate them to a cancer center hospital. Skull caps could be stylish, more comfortable than a wig, and not as bulky as a hat in winter. It is one thing to deal with your hair falling out when it happens and another to have a volunteer at your treatment center say to you, "Would you like one of these? Volunteers knit them for chemo patients." I also know a woman who sews beautiful burial gowns for premature babies and gives them to the maternity wards of local hospitals. There are so many things we can find to do if we want to. While I was at the hospital today, Jeff's cell phone rang and it was a reporter from the Detroit News wanting to do a story on me about the puzzles. So I did an interview from the hospital. SThe reporter asked if I wanted her to call me back later and I said, no, just fire away now. I went out in the hall to get away from the lounge TV and I started having POTS symptoms--dizziness and spacy in the head, so I sat down on the floor with my back against the wall. It was fine except for the zamboni that kept coming past . . .well it was really a ride-on floor cleaning machine but it looked like a zamboni with brushes. I am glad my post was inspirational. I really want to share that is possible to feel good and be happy when things are bad. Michigan Jan

Dear Lois, You say you don't look like you have cancer. You surely don't look like you have dysautonomia either. What a double whammy! I am glad you have your husband to help you get through this. In our case, while I am supporting Jeff, he is still taking care of me with my POTS. I am getting an appreciation of what he has had to deal with all these years taking care of me, and he is getting an appreciation of being sick for long term. The bugs are box elder bugs. They don't bite, they don't damage anything, but they litter with their little spots of poop and with the mounting piles of corpses. They are associated with female box elder trees. I think they eat the seeds. I called the window washers early this morning. I said please come and wash the outsides of the windows because they are streaked with soapy scum and smeared with bug parts. I told him that the box elder bugs had been conjugating on the windows. There was a pause at the other end of the phone line long enough for me to realize what I had said. I had meant to say they were congregrating there. Oh well, maybe they conjugate there also. Anyway, darn few of them left this morning. We are off to the hospital for chemo# 6. Then Jeff gets scoped and scanned. He is dreading it...he has such hopes the cancer has gone from his liver and dreading more chemo if it is not. I will post when we find out. I just sent a prayer your way. Cancer on top of Dysautomonia is a lot to cope with. Hugs, Michigan Jan

Dear Dana, There are several different kinds of dizziness. It can be caused by a sudden drop in blood pressure, vertigo, lack of enough oxygen to the brain, and other causes. I have all three kinds I just mentioned on occasion and I have learned to differentiate between them most of the time. People with dysautonomia often suffer from dizziness. Those with neurally mediated hypotension also pass out. I have POTS and I am not a fainter, but I sometimes wonder how it is possible to feel so completely dizzy and not faint. There are medications that can help with the dizzyness that comes with dysautonomia. It sometimes takes trial and error to find the ones that work best for you. It is best if you have a doctor prescribing who is knowledgable about dysautonomia. There is a listing of the known causes of dysautonomia in the info section of this website. It is quite an adjustment when one first finds out one has dysautonomia. However, living with it is doable when you find the right meds or things that help you. Michigan Jan

My POTS is giving me a lot of symptoms, plus I have been off hormone replacement for 3 months so I am having hot flashes, sweats, chills, and insomnia on top of the dysautonomia symptoms, I can't manage 15 minutes in the grocery, my husband has stage 4 cancer and is dreading his next chemo which is tomorrow. I am working 10 hours a day at the computer to get my new business going. Plus my kids tell me I am having Thanksgiving and I hate to cook. We are having a huge invasion of box elder bugs that walk right around the window sills and fly around the house. There are millions of them sunning themselves on the bricks of the house just outside the back door. And Yet . . . I am quite happy. I got up from the computer this evening, went outside, and pruned a shrub WHILE WHISTLING! Earlier today, I kept taking breaks from the computer to run outside with a spray bottle of dish soap and a broom and kill box elder bugs. I must have slew thousands so far. I sing and have hot flashes while I annililate them. I love the sound of my broom going twack, twack, twack on the bricks. There are a lot fewer bugs there each time I go out. And go out, I will, every day until there are none! So how come I can feel this good when things are crappy? I think that in spite of the fact that my husband is very sick, he is still able to go to lunch with his friends and help me in my business. And I love Fall weather. And after working myself silly trying to market my jigsaw puzzles to teacher stores, I am getting orders and compliments on my product. Being creative must be one key to feeling good. And when I feel good I am not as bothered by the POTS symptoms and even the menopause symptoms. There was a post earlier about what people on this forum do for fun. Many posted that they do creative things. Someone posted today on the cancer listserv I belong to: "When you are walking through ****, keep walking." I want to add...and do something creative at the same time. Michigan Jan

I can it a brain whiz. I am just sitting there and all of a sudden I feel weird in the head like something whizzed right through my brain and stunned me on the way through. BLAM! It happens sometimes when I am sitting at the high stool at my kitchen counter and I react by grabbing the counter and leaning way over it so I don't fall off the stool on to the floor...this has never happened. The stunned feeling doesn't last long--a matter of seconds at most. I feel most relieved when it passes. I also have another kind of brain thing when I feel suddenly dizzy. This can happen when I am walking down the street and it feels like suddenly someone jerked the pavement. I think this kind may be more of a vertigo. This one makes me want to get down and lie on the floor and even then, I think I will fall. It can last for several minutes. Michigan Jan

Blackwolf, I am so glad you are home and that you know you don't have cancer. Now you can recover at your own pace. Hugs, Michigan Jan

Happy Birthday to you, Happy Birthday to you, Have a happy POTS-free day, Happy Birthday to you! Michigan Jan

I had my gallbladder out at age 24. I had large stones. I have been so much better off without it! If you keep a diseased gallbladder for too long, it can spread disease to your liver. Do let us know what you find out. Michigan Jan P.S. Isn't it strange that so many on here with POTS have had their gallbladders out? And mine was at such a young age.

Dear Jamie, I am glad you found this forum. I have had POTS for more than 25 years now. 25 years ago when I didn't know what had hit me, there was no doctor who would take me seriously. I was sent to a psyciatrist! Today there are actually places you can go to get a diagnosis, which is at least a start. And there are things that you can do to help yourself fare better. If you haven't already done so, there is a section on this site about what helps. There is a link to the information on the main page of DINET. Not everything will apply to you, but you may get some good ideas. For me, it took many trials of many things to figure out what works best for me. I am still no good at grocery shopping or anything that have to stand up or stand still for. But I have made some improvments and I do have a nice life. I feel that there will be better treatments coming, now that a few dedicated doctors are working on it. When you are newly-diagnosed, POTS is very difficult to accept. It is a process that takes time. Just keep hanging out here. The very best to you Michigan Jan

PoohBear, I am thinking of you. You will get through it. Whenever I have had a big tragedy in my life I hve always thought because of my POTS and my propensity for panic attacks that I wouldn't be able to get through without my own health crisis. However, I have found the opposite to be true. I always get through better than I think I will. You will, too. Do use calming meds if you have them and already know how they affect you. Hugs, Michigan Jan

Yes, get help. It is possible to beat it. It is temporary. You will feel better, but probably have to go through a process to get there. There is no substitute for living through. I had years of psychotherapy. It really helped. I did not have the therapy because of POTS, but the results of the therapy has certainly helped me live with POTS so much better. You absolutely MUST focus on what you can do rather than what you can't. You are in my thoughts. Hugs, Michigan Jan

Dear Faithinspires, I am in your shoes. I really need a beta blocker to control my fast heart. I also have asthma and nasal allergies. I have had a very difficult time on all beta blockers but I now take one that works pretty well without side effects. I had to try a lot of them to get here. My advice: Keep a running list of every beta bocker you try and record all dosage amounts and side effects. NEVER take a normal dose of a beta blocker to start on it. The side effects will kick in and you will believe you can't tolerate it. Start out with the lowest dose pill or capsule they make. Then take even less than that to begin with. Go LOW and SLOW. First make sure that the drug is not in time-release form. If it is, you can't cut it or divide it. If it is not time-release then cut the pill into quarters or even eights. If you have a capsule, you can usually open it and pour some out. Take only a quarter or an eighth of the lowest dose for two weeks, then step up to the next level. As you move along, watch your symptoms--both the dysautonomia and the allergies. Whatever you do or whatever the doctor says, don't rush it. Stay ridicuoulsy LOW and SLOW. In my case, my heart rate will tell me when I hit a theraputic dose of beta blocker. Then stop right there and stay there. You may be able to find a beta blocker that works at a low dose and does not have side effects at that dose. You want to find the lowest theraputic dose. If you have too many side effects before reaching a theraputic dose, then try another beta blocker. There are a lot of them. I have tried about 16 different ones to find the one that works for me which is Sectral. There's more I want to say to you. When I started Sectral, I was prescribed a generic form. I took it and it worked. I refilled my prescription a few times and it was always the same generic. Then they gave me a different generic and it was like taking nothing at all...did not have any impact on my heart rate. Go figure. Yet another generic gave me an allergic reaction. Finally my doctor tired me on the name brand, Sectral. That worked. Now he always writes "dispense as written" on my prescription and then I have to go around with my health insurance and provide them with the complete list of beta blockers I have used, including the different brand and generic forms (another reason to stay current with that list). It is worth the fight to stay on a drug that works for me. Now, about those allergies. Beta blockers can actually cause asthma in a person with allergies. Some beta blockers constrict vessals and when they treat you for asthma, they are always trying to open them up! Yes, it seems we are stuck at cross purposes when we have both asthma and POTS. I have worked with the same allergist for over 10 years to put together a program that works for my asthma. Allergists know that some beta blockers are worse than others for constricting vessels. Sectral is one of the better ones for a person with asthma. So let the allergist help you choose which beta blocker to try first. Also make the allergist aware that you have dysautonomia (in my case, POTS) and you can't tolerate those asthma drugs that speed up the heart. There are some newer meds for asthma that I can take such as singulair. This one works by inhibiting leukatrines and does not work by vasodialation. That is a good thing for a person with POTS. I take claritin every morning and singulair every night. I also take Pulmicort, which is in the form of a tubuhaler. This means you inhale it by drawing breath instead of using a "puffer." The propellants in the puffers acutally cause me asthma! The best meds for not messing with you heart rate are the preventative ones, not the rescue ones. I NEVER use rescue drugs for asthma. I suppose if I had to I would but the answer is to be on such a good maintainance program as to not need the rescue meds. When you have both POTS and asthma, do not mess around with the notion that you don't want to take allergy medicine unless you need it. Practice maintainance. Sorry if this is long and sounds like a lecture. I hope it is helpful. Also it is late and my spelling is going to the dogs. Woof! Woof!

Dawn, that is a great idea. I think anything to get POTS awareness out there is a help. Because so many of my friends were raving about that HOUSE show, I decided to watch it. I first tried watching it a few weeks ago and had to quit about 5 minutes in becuase they grahically showed a heart pumping and had someone hooked up to a heart monitor that went into the solid beep with the flat line. I was absolutely horrified and could not watch any more. So last week, I decided to try again. I thought it might have been just the subject matter of the episode I chose to watch. Same thing,--it had graphic details of someone going in a crisis. Too much for this old girl! Michigan Jan

I have always been interested in the studies done by Dr. Paul Cheney on Chronic Fatigue Patients. I belong to the CFIDS Assoc. and read their newsletter and research reviews. Often they report on research about POTS and dysautonomia. There is a group of CDIFS patients that also have POTS. Dr. Cheney has published papers on reduced cardiac output in CFIDS patients. I was just reading a post on a CFIDS list I belong to from someone who had just watched a video of Cheney and that person, in his post, wrote his interpretation of what he got from watching the video. For the first time since I had read about Cheney's reports on reduced cardiac output, I actually understood what it was about. The person who posted wrote in such a clear way that I got it. Now I would like to read the original research Cheney did so I can perhaps share it with my cardiologist. I have been unable to locate it. If anyone here has any links to share, I would be grateful. I am looking not for a reporter's version, but rather the report of the original research Dr. Cheney wrote himself. Also, while searching the archives, I saw that Nicole's Mom said that Nicole was la patient of Dr. Cheney's. If Nicole's Mom or anyone else who has been his patient read this, would you post? I would especially like to hear from anyone with POTS who has seen him and been diagnosed with the reduced cardiac output. Thanks! Oh, and P.S. If you take the CFIDS Chronicle, there is an article about me in the current issue.

Lois, I am thinking of you and wishing you well and sending a prayer your way. I am so sorry you have to go through this. Michigan Jan

I had my gallbladder out when I was only 23. That is quite young, but I had large stones. I was very glad to have it out. It helped a lot of my symptoms (not the POTS, but ones caused by the gallbladder). If you have stones, they won't disappear. And if you have gallbladder disease it can spread to the liver eventually. A bad gallbladder with stones won't get better. I agree with your mother. Good luck and keep us posted. I think it will be big relief to have the dang thing out. Michigan Jan

To Dan and Linda, You have no idea of what finding the NDRF several years ago has meant to me. Being able to access the forum was a lifeline and it got me through a lot of POTS misery. I am sorry that Dan is so sick. I am thinking of you both and praying for you. I do carry you around with me and think of you several times a day. You are not alone.

Melissa, You can send it to : writeplace@comcast.net Thanks!

Melissa, Would you send that article to me, too?

http://www.mayoclinic.org/news2003-rst/1954.html